varying tacrolimus levels - suggestions?

[CoYogi]

I’m 4 years, 7 months past transplant and still working with my Nephrologist to staboliza tacrolimus levels is my bi monthly blood tests.

How long post transplant did it take you (if you take tacrolimus)?

Suggestions?

thanks

[Ahmad_92]

I am 2 years post and also struggling with tac level, for example 2.5 g of advagraf gave me level of 5 for 3 months then 8.1, now i am on 2 g for 3 months and it gives me 4-5 (which my nephrologist is happy with).And you know how spikes increase creatinine and increase side effects.

It seems diet and weight change have strong effect

[Blue-Quilter]

I'm approaching 5 years (in October) and the first three were a real roller coaster. I had to stop takin mycophenolate after only two month because my white blood cells were wiped out, even with the neupogen shot. So they had a very tight tacrolimus target range for me. I had close to 100 blood draws in those three years because I could not get a stable level. It was the most frustrating thing: they'd raise my dose and my level would fall; they'd lower my dose and it would rise; they'd keep it the same and my level would still change. I felt awful for a week after every dose adjustment. Of those nearly 100 blood draws, only 12 were in range.

Consequently, after three years (where the longest time between draws was only 3 weeks!), I was switched to belatacept infusions. The good news is I have ONE blood draw every 28 days, right before my infusion. The better news is that I feel pretty good. The headaches, diarreah, and tremors that were a part of every dose adjustment are a thing of the past! The drawback is I have to go to the hospital for the infusion, but I feel it's a reasonable price to pay for feeling so much better.

Talk to your team and see if it's an option for you. Oh, one factor to consider is how much you have to pay for it. When I started the infusions, I had insurance through work. I have since retired and have Medicare with a supplement. My share of the infusion is $500 each time, which is 10% of the total cost. Check with your insurance and see if it's covered 100%, or what your co-pay is if it's not. It adds up, obviously! But I can't take my money with me, so I guess it's not the worst way to spend it! 😏 Best wishes to you!